New moves

So, I am back. For the last month I don’t feel able to blog. My head is full of stuff and my body feels as though it is losing the plot. Following the original chemotherapy which leaves me unable to breathe and speak at the same time, I am given an oral chemotherapy. This makes me so ill I really feel I am going to die. After 2 weeks of treatment, I ask Mr Mason to take me to hospital. The faces of the consultant and other doctors makes me realise I am very ill. I am admitted to hospital where I stay for 5 days. My potassium, magnesium and sulphates are through the floor and in order to give them to me more quickly, I am taken to the cardiac ward where they monitor my heart and pump gallons of stuff into me. My heart has become a problem. The lower chambers of the heart are taking too long to recharge which is a problem. Every drug I am on is withdrawn and has to be checked against an ECG before it can be re-prescribed. My pain relief for fibromyalgia is withdrawn and for 2 days I am in constant pain until it is reinstated. After 2 days of infusions, I hope I can go home. My potassium level suddenly and unexpectedly drops and I am put back on infusions and an ECG in the middle of the night while the medical staff look worried and puzzled. I am finally discharged on the Friday evening which is an enormous relief. After 3 weeks of feeling incredibly ill and genuinely thinking I might die, I am home and feeling better with all chemotherapy stopped. I feel I am a different person but in a good way. Tears are not far from the surface at any point but again, that seems normal and is taking care of all the horrible stuff that happened last month. We spend time at our women’s group at Maggie’s talking about sobbing. It feels as though there is a well inside me which keeps overflowing but it just feels right although it may be a little disconcerting to people I am with.

Today I see the oncologist again and I am told I will have chemotherapy on a weekly basis instead of 3-weekly. This means I will have a lower dose which I should be able to tolerate. Getting to the wedding in Thailand suddenly looks much more achievable and it is clear my oncology team are really thinking about how to do this safely. I ask if I can reduce or stop taking steroids. The effect is horrible in that my face and trunk are swollen. My feet resemble pig’s trotters. I would really like to look a bit more normal in the wedding photographs although I appreciate being in the photographs at all with be something of a triumph. Maybe a yashmak will do the trick. I actually feel very calm about all the changes and positive about what is happening. The treatment is, as usual, messing up any work I have. I have meetings for when chemotherapy is scheduled and, ironically, have been offered more work this month that probably in any other month this year. I have to turn down quite a lot.

While I am writing this blog, the door rings and it is a man from Breast Cancer Care. He starts to tell me about this amazing drug which has been developed by BCC but which is only available privately. He also tells me that it has had “100% success rate” and is used for breast cancer and other cancers. He does not know how the drug works. I ask is it based on an enzyme? Is it for women who are HER2+, ER+ or PR+? He does not know. He bangs on about one in 8 women getting breast cancer. It could be his mother. I tell him it is me. I have had the original breast cancer and now have secondary cancer. I ask at the beginning if he is asking for money. He says no. Within minutes he is saying people are giving 21p to help get this drug paid for by the NHS. I ask is it available through the National Cancer Drugs Fund. He says no but that people who are middle and working class deserve to be able to get hold of it when needed. The naivety of getting a drug funded by the NHS almost takes my breath away and, tears near the surface, I just start crying and he pretty much runs away. It is a surreal moment and I suspect he won’t sleep tonight.

All in all, everything is well and I am happy and cheerful and looking forward to what the next months bring. We’re going through a lot of changes at the moment including selling the house and moving but it feels positive and the right thing to do. If we’re not going to move now, when will be the right time?

2 thoughts on “New moves

  1. Its good to have you back Shelley, with your precious gems of wisdom and disturbing observations.
    It would be good to know what our political leaders might say in response to the challenges you offer them as tax cuts are promised, reductions in “benefits” secured and health research privatised.

  2. Shelley, huge hugs. If you could get through those awful 5 days in hospital last month and come out and still be upbeat and positive, getting to Thailand for the wedding will be a walk in the park. Hope this new weekly chemo regime is kinder to you. Take care of yourself Love Yvonne xxxx

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